One of the greatest worries I had when considering going on disability was time. I’m the type of person that is always doing something. Working, naturally, took a lot of time. So, what would I do for those now free 8 hours a day? This question haunted me more than finances, EDS, and building our house. (We were just at the beginning process of selling our house, moving to a rental and breaking ground for the new house.)
That’s saying something. It worried more than all those things combined. As my window of things I can actually do was slowly sliding shut, what would I do instead? Nearly everything I like to do involves some type of physical ability. Hiking, fishing, camping, birding, gardening, horses, you name it. To some degree you have to be able to use your body. Yes, I’ve adapted. As I tell those people who ask me why I bother to do 10 extra steps just so I can fish; ‘You adapt, or you die. That is the nature of things, and personally, I’m not ready to die just yet.’ or ‘What other choice is there? Should I stay home 24/7 and stare at the blank wall?’ But it is very hard to replace the things you’ve enjoyed, even harder when you have no idea what to replace it with.
After I was done working, honestly it took me a very long time to just recover. I don’t think people understand just how draining a job is on someone like me. I try perhaps too hard, to appear normal. I don’t complain constantly about the pain I’m in, or ask for a lot of help. I suppose it is partially because I’m stubborn, but also because who really wants to be different in that way? I knew I was exhausted, but I didn’t realize just HOW exhausted I really was. The first month or so my daily routine was; get up with David and make breakfast; go back to bed; get up around lunch time, do some Yin yoga and read or watch a documentary; fall asleep on the couch; get up when David came home from work and make dinner; spend time with him until it was bedtime. Collectively I think I was averaging about 15-16 hours sleeping. Which is impressive, because normally I can’t sleep in long sessions, the pain just gets to be too much and I have to move around. I think I was just to that point of exhaustion where the brain overrides every other thing and makes you rest. Gradually I worked out of it and assumed a more normal day routine.
I spend roughly 10-14 hours of a day alone, that is the average work day for David. I rarely leave the house unless I have a specific purpose. Doctor appointment, grocery store, etc. So there are times where I do not physically leave the house for 6-7 days. That is a lot of alone time. I still need naps, but not nearly like I used to, so most of the day I’m up. What to do with that time? That’s the question. I hear people say things like ‘when I’m retired I’m going to …..’. Okay, but most of those things are things assume you are physically healthy. What if you aren’t? If you had asked me 10 years ago what I was planning to do when I retired, I would have said fishing, hiking, camping, traveling, etc. Wheelchairs don’t ‘do’ hikes. Traveling is very hard on me. A week of vacation usually requires a week of bed rest and extra pain meds at home. Besides, David still works, so our travel is limited not only be funds, but vacation schedules. I cannot physically managing fishing alone, I have to have David’s help, so it is limited.
I’m still working on this question. Trying different things to see if they fit and are workable. The bad thing about new hobbies is that they all cost money. I’ve started drawing again, and dabbled a bit with painting. I can’t go at it full tilt because it’s just too costly. One tube of a decent quality oil paint costs between $6 and $18. One color. Not to mention brushes, canvas, and cleaning supplies. I do still use my camera. No longer on hikes, but instead focused on the bird feeder area. I have increased my bird feeder area, though it was through a lengthy discussion and compromise with the hubby. He hates the mess, and thinks it attracts mice, so I don’t use traditional feeders now. Just suet, hummingbird, and orioles. Still, it’s another expense, even if it’s not a large one. Knitting is an addiction, I think, and yarn is the drug. I’m glad I learned, however, because it is helping me to maintain my hand/finger dexterity and forces the brain to look at things differently.
I had started to feel like my brain was going mushy, not engaged enough, and frankly bored. I’m not a huge tv watcher, a few shows I really like, but for the most part the tv is off all day. I read a lot. I use ‘One Hundred Free Books’ to find titles for free. Mostly new authors, some are good, some a great, and some get deleted. Can’t complain, they are free. I read a lot of science and medical journal sites, it helps satisfy my natural curiosity some. I started playing puzzle type games. Just to make my brain actually work at something. When they stop being challenging, I move on to another. Then I found ‘Corsera’. I’ve taken several of their online, free classes and have really enjoyed it. I’ve got another one starting soon, about Fantasy and Science Fiction in Literature. Quite a lot of the required reading list were things I’d never read. ‘Dracula’; ‘Herland’; ‘The Martian Chronicles’. I like to push myself outside my comfort zone, just to make the brain work harder. Nearly all the required reading list came with links to free e-copies of the books, so it wasn’t that big of an investment. Sure, I’ll likely never actually use what I learn, but that isn’t the point. The point is keeping the brain up to speed.
Then of course, there is this blog. Still feeling my way around it and not sure how to make it a part of my routine. I do enjoy writing, so I’ve started gathering information and taking a few classes on it. Perhaps some day I will actually publish a book. Who knows? I have modified the garden so that I can still do some of it. I do enjoy gardening, eating food you’ve grown yourself is just a perk. I like being outside, getting in the dirt, being around the birds. Quite a few of the birds are so used to me now that they just go about their business. Except the hummingbirds. Those little jewels are a delight. They are so comfortable now that I’ve had one or two land on me and come up to get a drink straight from the jar I’m holding when I go out to refill the feeders. So much energy and feistiness in such a tiny little body. We’ve had our first ever Eastern Phoebe nest under the deck this year. What a delight they have been! They eat bugs by the hundreds. Last year we had problems with wasps building their nests in the gaps on the windows. The Phoebes have taken care of that and other bad bugs. Between the hummingbirds and the Phoebes, no mosquitoes!
Well, I just received a shipment of new Penstemons. We lost a few of the plants due to the long, wet, and cold winter, these are their replacements. This one is ‘Red Ridinghood’, named for its bright red flowers. The hummingbirds and bees adore the other two varieties we have, ‘Dark Towers’ and ‘Snow White’. I need to go get them in the ground, which means I’ll be down most of tomorrow, but hey, it’s fun.
Anyone that wants to weigh in on what they do or how they found ways to do what they love while on disability, please do. I’m including links, if anyone is curious about anything mentioned here, just comment or send me a message. Thanks for reading!
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